One of the things that happens when you are in the hospital at your baby's bedside is that you get tunnel vision at first. All you see or care about is what is happening right there with your child. After a while though, when the dust starts to settle, you start to look around and see who is in there with you.
I started talking to another couple first that had the baby right next to Dane. Dane's next door neighbor was full-term but had inhaled meconium during birth and needed some support for the first couple of weeks. Then I started talking to the couple one down from our next door neighbors and across the aisle. They had twins born at 27 weeks and were at two different NICUs. Finally, I met the couple across the aisle from Dane, who had a baby that had needed support since his birth eight months ago.
Dane's next door neighbor's father gave our little group a name, The Get-Along-Gang, because every time he came in he checked on his baby first, then would look over to see if Dane was doing alright, and then across the aisle at the other baby, and finally down the aisle at the twin. We found out that we all did that when we got in, I would check on Dane and then look at the other babies' vital signs to see how they were. That is when I learned the magic of intra-NICU parental support. Andrew had discovered this before me because he was usually in the waiting room with Claire while I was in there with Dane, and got to talk to many of the other parents. I had tunnel vision much longer, but when you can come in and say hi to the other parents and get and give status updates, it makes it much better because it takes away the isolated loneliness feeling. These are the things that you never forget, the camaraderie that developed as a result of our little crew.
The Get-Along-Gang is getting smaller by the minute, thank God. Dane's next door neighbor went home shortly after he arrived, and the baby across the aisle is now being treated in another state. Soon, the twin will join her sister at home (she arrived last week!), and hopefully within a few weeks Dane will be home as well.
Long live the Get-Along-Gang.
Thursday, December 29, 2011
Bye Bye Vent Tube!
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| His oxygen hood he needed right after they took out his ventilator tube |
I don't think I have shared yet that Dane enjoys ex-tubating himself, (pulling out his tube) and did so every chance he got. He has done it four times since he's been born, and finally the nurses started swaddling him so tight he looked like a little sausage. On the time before his last occurrence, the doctors left something called an oral airway by his bed, so that if he pulled his tube out again, they could put this plastic hook thing in his mouth that pushes his tongue down and opens up his airway through his mouth, possibly keeping him from needing the ventilator tube.
It became especially important when they thought he had pnuemonia two weeks ago, which can easily happen with babies on ventilators. He got antibiotics right away and nothing worsened luckily. But since then, the doctors and nurses wanted him off the ventilator as soon as possible.
This brings us to Andrew and I at his bedside at this final ex-tubation. As soon as we got there, I could tell something was wrong, because the baby's breathing sounded very different and laborious, and I thought I could hear him cry a little. I mentioned to Andrew that I could hear his voice, which I hadn't heard since the two cries he gave when he was born. I asked some of the nurses to come over and see if everything was normal, and from the "uh oh" looks I could tell he had pulled his tube out yet again. The nurses then all swarmed the bed, propped him up and put in the oral airway. Andrew stood nearby with arms tightly crossed and a worried look, before finally crossing to the other side of the room so that he wouldn't have to watch a possible repeat of what he had already witnessed. I noticed that his oxygen was still in the high 90's, which meant he was getting enough air throughout this whole process, so I wasn't as worried as Andrew, but still was worried enough to leave to room and go pump and let the nurses do their thing without me. I didn't leave until Dawn assured me that he was tolerating the oral airway and would be alright while they decided if they needed to put his tube back in or not.
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| Dane without the tube, about a week ago |
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| Breathing through his mouth with no support, sleeping peacefully |
Saturday, December 24, 2011
Here comes Santa Clause!
You better watch out!
You better not cry!
You better not de-saturate I'm telling you why,
Santa Claus is coming to town!
We got our picture with Santa a little while ago, and he left Dane a little teddy bear!
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| Dane and Santa when he was still on his ventilator tube |
This was taken a few days before Dane got off of the ventilator tube, so he got what he wanted for Christmas: To be tube free and for Nana and Papa to come visit him every day while they are in NC, and for Daddy to hold him! Thanks Santa!!
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| Dane and his Pawpaw! (my dad) |
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| One of Dawn's goal sheets |
Auntie Stephanie and the Dream Team
On the fourth day after Dane was born, he was transferred over to Brenner's Children's Hospital so that they could have him in the same hospital as the ENT department that would be working with him. The transport team came in with this big clear incubator stretcher, and then asked Andrew and I to give Dane a big kiss before they left. It was kind of scary because it felt like she was asking us to kiss him goodbye in case something happened to him. I kissed his face and Andrew kissed his "piggies", or what we call our children's feet.
It was a somber car ride for us to the new hospital just a few minutes away, but once we got there, we turned a major corner. We went from feeling like he was clinging to life to feeling like everything just may turn out fine after all. I think it was Dawn and his "Auntie Stephanie".
Dawn is a NICU nurse that has been there for 31 years, and she was there when Dane first arrived. Just the way that she touched him and played with him was so different from the careful handling he received over at Forsyth. It was as if he was not nearly as fragile as we thought, and the environment was noisy-ish, bustling, lively. Nurses were talking and laughing, it just had a different vibe about it. Dawn asked me if I wanted to hold him, and I tried to say no since he had just made a trip from one hospital to another and I didn't know if he was okay, but she did not allow it. She said, " Sit down. He will be fine. I've been here for a long time so if something goes wrong I'll just fix it!" With that, I sat down and held him and have held him nearly every day since then.
My friend Arika said they are more aggressive with the care the babies get at Brenner's, and she wasn't lying. Almost immediately they upped the amount of milk he was getting, and kept upping it almost every two days or so, and then added a calorie enhancer to make it even more fattening. As a result he started putting some meat on those little bones and becoming calmer and happier. When he arrived he was 4 lbs and 13 oz, and after a week, he started gaining ounces at a time. He was very stable, no heart rate drops, or breathing difficulties.
Auntie Stephanie is the second great blessing after Dawn, her given name being Stephanie Smith Bowman, and she treats my child like her own. When you have to go home and leave your baby behind, you want to know that someone like her is taking care of him. She gives him baths all of the time, takes him out and holds him when he's crying and I'm not there, is extremely caring and nurturing, and is just generally one of his second moms. She is another one that pushed my comfort zone a little with handling Dane, and for that again I am really grateful. She said she felt like Dane was sent there for her, but I felt like she was sent there for me! God was definitely present there.
There is a type of care that preemies can get from parents that is research based and is extremely beneficial, called Kangaroo care. Basically, the baby is unwrapped and stripped down to just a diaper, and the mother wears something that can be opened up so that the child can be placed heart to heart and skin to skin. They can sync up heartbeats, go fast asleep, and conserve energy that they then use for growing and gaining weight. They need less oxygen, have better emotional development, and shorter stays. I was too scared at first because of his ventilator tube and all of his other acoutrements, but Stephanie put me at ease and I kangaroo held Dane, and it was life changing for me. To hold your baby like that and feel their warm body next to yours, and snuggle them like that while they sleep is the way it is meant to be.
He finally felt 100% like he was my baby.
It was a somber car ride for us to the new hospital just a few minutes away, but once we got there, we turned a major corner. We went from feeling like he was clinging to life to feeling like everything just may turn out fine after all. I think it was Dawn and his "Auntie Stephanie".Dawn is a NICU nurse that has been there for 31 years, and she was there when Dane first arrived. Just the way that she touched him and played with him was so different from the careful handling he received over at Forsyth. It was as if he was not nearly as fragile as we thought, and the environment was noisy-ish, bustling, lively. Nurses were talking and laughing, it just had a different vibe about it. Dawn asked me if I wanted to hold him, and I tried to say no since he had just made a trip from one hospital to another and I didn't know if he was okay, but she did not allow it. She said, " Sit down. He will be fine. I've been here for a long time so if something goes wrong I'll just fix it!" With that, I sat down and held him and have held him nearly every day since then.
My friend Arika said they are more aggressive with the care the babies get at Brenner's, and she wasn't lying. Almost immediately they upped the amount of milk he was getting, and kept upping it almost every two days or so, and then added a calorie enhancer to make it even more fattening. As a result he started putting some meat on those little bones and becoming calmer and happier. When he arrived he was 4 lbs and 13 oz, and after a week, he started gaining ounces at a time. He was very stable, no heart rate drops, or breathing difficulties.
There is a type of care that preemies can get from parents that is research based and is extremely beneficial, called Kangaroo care. Basically, the baby is unwrapped and stripped down to just a diaper, and the mother wears something that can be opened up so that the child can be placed heart to heart and skin to skin. They can sync up heartbeats, go fast asleep, and conserve energy that they then use for growing and gaining weight. They need less oxygen, have better emotional development, and shorter stays. I was too scared at first because of his ventilator tube and all of his other acoutrements, but Stephanie put me at ease and I kangaroo held Dane, and it was life changing for me. To hold your baby like that and feel their warm body next to yours, and snuggle them like that while they sleep is the way it is meant to be.
He finally felt 100% like he was my baby.
Monday, December 12, 2011
Home, partly...
I would say the worst part of the first week was the day we had to go home and leave Dane behind. We spent the last couple of hours with him and then went down to the lobby with all of my stuff, but no baby. I have a good friend I have mentioned before in this blog that had a son in the NICU, Arika, and she warned me about what this day would be all about. I thought I was prepared and knew what it would feel like, empty, hollow, too quiet, and then when we got home, the empty nursery. She relayed a story to me about how another woman left the hospital at the same time as her, the difference being this woman carried her newborn in her arms, and my friend asked her husband to take her back inside until the other woman went away. Sure enough, as I was waiting for Andrew to bring the car around so we could go home, another young mom came out, being pushed in a wheelchair, holding her new baby.
It would be easy to feel angry about how you can try and do everything right, but that so much is out of your control, and you just have to deal with it and move forward. It doesn't make it hurt any less knowing this, but what it does give you an opportunity for is to rely on your faith and your husband, and to let friends get into spaces in your heart that are normally much more guarded. The important thing in these moments, to me at least, is to let the feelings come, move through and experience them, journal if you need to, and let the healing come from God, and from people who love you and want the best for you. During this time, you have to be strong for your child, they are depending on you still be the mommy (or the Daddy as my husband just said) even though they are not with you yet. I felt scared, sad, and cried rivers all the way home, and I allowed myself to do that and didn't try to put on a brave face. Energy is limited and precious, and it is better spent learning to cope with the new reality you are faced with now.
To anyone and everyone who is going through this, or who has gone through this, God bless you and be with you. Martha Harrelson once said that she thought people who had babies in the NICU were special people, and I can see how that comes to be. It hollows you out like a river that runs through a canyon over time, and the room it leaves seems to want to be filled with concern for others going through the same thing, and for giving time and encouragement when maybe before you would have been afraid to say something. I have had people tell me about their experiences from four days to over three months, and these have been some of the nicest and most encouraging letters I have ever gotten. The NICU is a hard, sad place, but it sure does make for some beautiful people, both babies and parents.
It would be easy to feel angry about how you can try and do everything right, but that so much is out of your control, and you just have to deal with it and move forward. It doesn't make it hurt any less knowing this, but what it does give you an opportunity for is to rely on your faith and your husband, and to let friends get into spaces in your heart that are normally much more guarded. The important thing in these moments, to me at least, is to let the feelings come, move through and experience them, journal if you need to, and let the healing come from God, and from people who love you and want the best for you. During this time, you have to be strong for your child, they are depending on you still be the mommy (or the Daddy as my husband just said) even though they are not with you yet. I felt scared, sad, and cried rivers all the way home, and I allowed myself to do that and didn't try to put on a brave face. Energy is limited and precious, and it is better spent learning to cope with the new reality you are faced with now.
To anyone and everyone who is going through this, or who has gone through this, God bless you and be with you. Martha Harrelson once said that she thought people who had babies in the NICU were special people, and I can see how that comes to be. It hollows you out like a river that runs through a canyon over time, and the room it leaves seems to want to be filled with concern for others going through the same thing, and for giving time and encouragement when maybe before you would have been afraid to say something. I have had people tell me about their experiences from four days to over three months, and these have been some of the nicest and most encouraging letters I have ever gotten. The NICU is a hard, sad place, but it sure does make for some beautiful people, both babies and parents.
Thursday, December 8, 2011
The first three days
Anyone that has had a baby in the NICU can tell you, the first three days are like nothing you have ever been through before. It is somewhat surreal, very scary, confusing, and can sometimes be infuriating.
Surreal because you just had this baby and you probably haven't even gotten to hold them yet. Then, when you finally get to the unit where they are, they are hooked up to fifty different tubes and IVs, and you are afraid to touch them! So there you are, looking at your brand new baby, and they are a million miles away from you at the moment. Surreal is a kind way of saying what this is like.
Scary because chances are, if you have ended up here, something has gone very wrong, and your child may be in a really fragile state. This is usually when your family asks you, "did you hold them yet?" and you are thinking to yourself that you will probably rip something out by accident and then they would be in real trouble. Sometimes your family will then say, "well don't you think you better ask to hold them?", without understanding that you are scared to death and the baby looks super small and extremely breakable. I didn't hold Dane until the third day I was there, and then it was okay. You sometimes have to push yourself through the fear and then it is easier afterwards.
Confusing comes in when you finally meet with the doctors. If you have a team you are working with, sometimes you hear a few different plans about the same issue. For example, with Dane's nasal blockage, one doctor told us that the ENT would possibly do a procedure there in the NICU in the next couple of days, another doctor said that they would probably transfer him to Brenner's for a transpalatal procedure (where they remove the hard palate and repair the passage and reattach the hard palate back), also in the next few days, and then finally that they were going to drill holes in the bone and that they may do it the same day they told us about it. In reality, he has to wait until he is 7.5 pounds or is 39 weeks old before they either put in a trach tube or do a repair surgery. They still haven't decided what they are going to do. Patience is a necessary virtue here. Quite necessary.
Infuriating because it seems like part of the doctors' job is to give you the worst case scenario for every single probability, whether it is really likely or not. Of course this breeds worry in an already tense and emotional time, just in case you had any chance of sleeping well at night. We had to meet with a geneticist to see if Dane has a sydrome of some type because when there is more than one thing wrong, (brain cyst, choanal atresia) they then look for syndromes. The doctors also told us that his ears were lower than usual and his chin was farther back. They decided to do a chromosome test and then a test for CHARGE syndrome, and we would find out the results in two weeks. The ears and the chin have since normalized as he grew, but we are still waiting for the results for the CHARGE test. However, he did have an MRI on day three and they discovered his brain cyst was gone. That was wonderful, miraculous news, because my OB later told me he could have been blind, had seizures, or some other difficulty because it was a large cyst.
One of the blessings of the situation was having almost four days in the hospital while I was recovering from my c-section. I got up and moved around as soon as I was catheter-free, and it really helped with being able to walk around and get up and down by myself quickly. After the first day, I was a frequent flier in the hallways, walking from my hospital room over to the NICU, at first pushing a wheelchair in case I needed to sit down on the way, and then hustling like a powerwalker on a mission. I was planning on nursing, but since that is impossible with a ventilator tube, I chose to pump instead, so every two hours I had a good reason to get down there and visit. NICU nurses are a special breed of person, and they are invaluable to every parent dealing with this situation. More than once it would be really late at night (or early in the morning), and I wouldn't be able to rest or sleep, so I would go down and ask Dane's nurse to talk about things. I had a really awesome nurse named Mary Rose, and she was very calming and nurturing, and helped me through the darkest period. The last day I was there, I met Martha Harrelson, who I had heard about through my friend Arika that had a NICU experience of her own, and she was just so comforting and helpful that I can see why my friend loved her so much. Unfortunately the same day we met Martha, Dane was transferred to Brenner's NICU so we didn't get to take advantage of her knowledge, experience, and sheer force of personality.
Yet another blessing during these days was the amount of texts, calls, emails, flowers/cards/candy, and general outpouring of love from our friends, neighbors, and family. It helps when it is 8:00 PM and all of your visitors have gone home and you are all by yourself in your hospital room, and you have something to take your mind off of things. That, and my mommy was here and that sometimes is the biggest help of all.
Surreal because you just had this baby and you probably haven't even gotten to hold them yet. Then, when you finally get to the unit where they are, they are hooked up to fifty different tubes and IVs, and you are afraid to touch them! So there you are, looking at your brand new baby, and they are a million miles away from you at the moment. Surreal is a kind way of saying what this is like.
Scary because chances are, if you have ended up here, something has gone very wrong, and your child may be in a really fragile state. This is usually when your family asks you, "did you hold them yet?" and you are thinking to yourself that you will probably rip something out by accident and then they would be in real trouble. Sometimes your family will then say, "well don't you think you better ask to hold them?", without understanding that you are scared to death and the baby looks super small and extremely breakable. I didn't hold Dane until the third day I was there, and then it was okay. You sometimes have to push yourself through the fear and then it is easier afterwards.
Confusing comes in when you finally meet with the doctors. If you have a team you are working with, sometimes you hear a few different plans about the same issue. For example, with Dane's nasal blockage, one doctor told us that the ENT would possibly do a procedure there in the NICU in the next couple of days, another doctor said that they would probably transfer him to Brenner's for a transpalatal procedure (where they remove the hard palate and repair the passage and reattach the hard palate back), also in the next few days, and then finally that they were going to drill holes in the bone and that they may do it the same day they told us about it. In reality, he has to wait until he is 7.5 pounds or is 39 weeks old before they either put in a trach tube or do a repair surgery. They still haven't decided what they are going to do. Patience is a necessary virtue here. Quite necessary.
Infuriating because it seems like part of the doctors' job is to give you the worst case scenario for every single probability, whether it is really likely or not. Of course this breeds worry in an already tense and emotional time, just in case you had any chance of sleeping well at night. We had to meet with a geneticist to see if Dane has a sydrome of some type because when there is more than one thing wrong, (brain cyst, choanal atresia) they then look for syndromes. The doctors also told us that his ears were lower than usual and his chin was farther back. They decided to do a chromosome test and then a test for CHARGE syndrome, and we would find out the results in two weeks. The ears and the chin have since normalized as he grew, but we are still waiting for the results for the CHARGE test. However, he did have an MRI on day three and they discovered his brain cyst was gone. That was wonderful, miraculous news, because my OB later told me he could have been blind, had seizures, or some other difficulty because it was a large cyst.
One of the blessings of the situation was having almost four days in the hospital while I was recovering from my c-section. I got up and moved around as soon as I was catheter-free, and it really helped with being able to walk around and get up and down by myself quickly. After the first day, I was a frequent flier in the hallways, walking from my hospital room over to the NICU, at first pushing a wheelchair in case I needed to sit down on the way, and then hustling like a powerwalker on a mission. I was planning on nursing, but since that is impossible with a ventilator tube, I chose to pump instead, so every two hours I had a good reason to get down there and visit. NICU nurses are a special breed of person, and they are invaluable to every parent dealing with this situation. More than once it would be really late at night (or early in the morning), and I wouldn't be able to rest or sleep, so I would go down and ask Dane's nurse to talk about things. I had a really awesome nurse named Mary Rose, and she was very calming and nurturing, and helped me through the darkest period. The last day I was there, I met Martha Harrelson, who I had heard about through my friend Arika that had a NICU experience of her own, and she was just so comforting and helpful that I can see why my friend loved her so much. Unfortunately the same day we met Martha, Dane was transferred to Brenner's NICU so we didn't get to take advantage of her knowledge, experience, and sheer force of personality.
Yet another blessing during these days was the amount of texts, calls, emails, flowers/cards/candy, and general outpouring of love from our friends, neighbors, and family. It helps when it is 8:00 PM and all of your visitors have gone home and you are all by yourself in your hospital room, and you have something to take your mind off of things. That, and my mommy was here and that sometimes is the biggest help of all.
Wednesday, December 7, 2011
The beginning
I would say that really the beginning was back in October, when we had a big scare after an ultrasound. We thought that Dane had no corpus callosum, the membrane that links the left and right hemispheres of the brain together and transmits information between the two sides.
This possibility arose when we had an ultrasound at the OB's office when I was being paranoid about not feeling Dane move as much as I thought he should at 28 weeks. They did the ultrasound to check him out and make sure he was moving, which he was, but they also found that he had a cyst on his brain. We were sent to Comprehensive Fetal Care to get a more intensive ultrasound to get a better idea as to what kind of cyst he had, and once there, the doctor also noted that he did not see Dane's corpus callosum. We had to wait a week for another ultrasound, during which I kept expecting the doctor to say, "Oh! There it is!", but he did not, and sent me to get a fetal MRI a week and a half later. During this entire time, we were scared, worried, and questioning everything we did during the pregancy, trying to figure out what would cause something like this to happen.
After the MRI, (one hour in a tube, which for a claustrophobic person such as myself was equal to the seventh level of hell), the doctor saw us a week later to go over the results. I reached a breaking point in the waiting room immediately before the doctor saw us, because I just did not want to hear that not only did they not find a corpus callosum but that they found something else that would be devastating in an entirely new way. I started crying in the waiting room, and all the way back into the doctor's office. He walks in and says, "Oh, did someone already tell you the results of the MRI?" My husband and I just looked at each other with chalk white faces and said, "No, and that is not a good sign!" The doctor said, "They found his corpus callosum, it is 100% there. So is his cyst, but that will probably go away and we aren't going to need to do anything about it." I started laughing hysterically because it was all just too much to go from low to high in the space of 30 seconds, and Andrew just looked confused and said, "wait, what just happened? What is going on?" Again we were assured that our son's brain was fine, and that we had nothing to worry about in the short run, but that once he was born he would need an MRI to see what was going on with his cyst.
Andrew and I walked around in a daze for a couple of days letting the idea that our son was going to be okay sink in. It took a while to get over the drain from all of the stress of the previous three weeks, and the intense tiredness from carrying around so much stress for so long. Just as things were getting back to normal, and we were starting to enjoy the pregnancy again, the contractions began.
At this point we were at 32 weeks and 6 days. I went to the ER by myself hoping that I was being paranoid and that it was just Braxton Hicks. They gave me a terbutaline shot, observed me until 1 AM Tuesday morning, and sent me home. I stayed on bedrest (sort of) all day Tuesday, and Tuesday night at 11 PM, they came back, stronger than before, and much more often. This time, Andrew came with me, and once we got to the ER again, I got three shots of terbutaline, and was then sent in an ambulance to Forsyth Medical Center because I was having labor pattern contractions. We got to Forsyth around 3 AM Wednesday morning, and I was observed all day and sent home around 6 PM that night. The contractions began again Thursday morning, got stronger and stronger, until at 4 AM Friday morning I couldn't take it anymore and we went back to Forsyth's ER. I was admitted to Labor and Delivery, had strong contractions, put on magnesium sulfate for a day and a half, and when none of that worked and I was dilated to four centimeters, was told it was time to have a c section and gave birth to Dane at 10:42 AM on November 19th, 2011. He was 33 weeks and 5 days old, weighed 4 lbs 13 oz, and was 18 1/2 inches long. He cried twice and then went into respiratory distress. They rushed him down to the NICU where he was resuscitated and immediately put on a ventilator.
It turned out that he had choanal atresia, which means that his nasal passage was blocked with a bone, and since babies are obligate nose breathers, he couldn't breathe. Andrew had watched him struggle to breathe, and saw the swarm of doctors rush to help his son, and has been deeply affected by that ever since. Thus began our stay at the NICU at Forsyth Medical Center, the Neonatal Intensive Care Unit, and the beginning of a journey that has changed the way our family interacts, the way we view life, and the realization that without God, our friends, and our amazing families, we would not be able to endure.
It is really interesting what you can go through, what you can stand, when you have support, and when you have a child that is relying on you and your strength. We are going to document our journey on this blog, in part to keep our friends and family informed as to the latest news with Dane, as well as to hopefully provide inspiration to other families that may be experiencing the same thing. Thank you for coming along on this journey with us.
This possibility arose when we had an ultrasound at the OB's office when I was being paranoid about not feeling Dane move as much as I thought he should at 28 weeks. They did the ultrasound to check him out and make sure he was moving, which he was, but they also found that he had a cyst on his brain. We were sent to Comprehensive Fetal Care to get a more intensive ultrasound to get a better idea as to what kind of cyst he had, and once there, the doctor also noted that he did not see Dane's corpus callosum. We had to wait a week for another ultrasound, during which I kept expecting the doctor to say, "Oh! There it is!", but he did not, and sent me to get a fetal MRI a week and a half later. During this entire time, we were scared, worried, and questioning everything we did during the pregancy, trying to figure out what would cause something like this to happen.
After the MRI, (one hour in a tube, which for a claustrophobic person such as myself was equal to the seventh level of hell), the doctor saw us a week later to go over the results. I reached a breaking point in the waiting room immediately before the doctor saw us, because I just did not want to hear that not only did they not find a corpus callosum but that they found something else that would be devastating in an entirely new way. I started crying in the waiting room, and all the way back into the doctor's office. He walks in and says, "Oh, did someone already tell you the results of the MRI?" My husband and I just looked at each other with chalk white faces and said, "No, and that is not a good sign!" The doctor said, "They found his corpus callosum, it is 100% there. So is his cyst, but that will probably go away and we aren't going to need to do anything about it." I started laughing hysterically because it was all just too much to go from low to high in the space of 30 seconds, and Andrew just looked confused and said, "wait, what just happened? What is going on?" Again we were assured that our son's brain was fine, and that we had nothing to worry about in the short run, but that once he was born he would need an MRI to see what was going on with his cyst.
Andrew and I walked around in a daze for a couple of days letting the idea that our son was going to be okay sink in. It took a while to get over the drain from all of the stress of the previous three weeks, and the intense tiredness from carrying around so much stress for so long. Just as things were getting back to normal, and we were starting to enjoy the pregnancy again, the contractions began.
At this point we were at 32 weeks and 6 days. I went to the ER by myself hoping that I was being paranoid and that it was just Braxton Hicks. They gave me a terbutaline shot, observed me until 1 AM Tuesday morning, and sent me home. I stayed on bedrest (sort of) all day Tuesday, and Tuesday night at 11 PM, they came back, stronger than before, and much more often. This time, Andrew came with me, and once we got to the ER again, I got three shots of terbutaline, and was then sent in an ambulance to Forsyth Medical Center because I was having labor pattern contractions. We got to Forsyth around 3 AM Wednesday morning, and I was observed all day and sent home around 6 PM that night. The contractions began again Thursday morning, got stronger and stronger, until at 4 AM Friday morning I couldn't take it anymore and we went back to Forsyth's ER. I was admitted to Labor and Delivery, had strong contractions, put on magnesium sulfate for a day and a half, and when none of that worked and I was dilated to four centimeters, was told it was time to have a c section and gave birth to Dane at 10:42 AM on November 19th, 2011. He was 33 weeks and 5 days old, weighed 4 lbs 13 oz, and was 18 1/2 inches long. He cried twice and then went into respiratory distress. They rushed him down to the NICU where he was resuscitated and immediately put on a ventilator.
It turned out that he had choanal atresia, which means that his nasal passage was blocked with a bone, and since babies are obligate nose breathers, he couldn't breathe. Andrew had watched him struggle to breathe, and saw the swarm of doctors rush to help his son, and has been deeply affected by that ever since. Thus began our stay at the NICU at Forsyth Medical Center, the Neonatal Intensive Care Unit, and the beginning of a journey that has changed the way our family interacts, the way we view life, and the realization that without God, our friends, and our amazing families, we would not be able to endure.
It is really interesting what you can go through, what you can stand, when you have support, and when you have a child that is relying on you and your strength. We are going to document our journey on this blog, in part to keep our friends and family informed as to the latest news with Dane, as well as to hopefully provide inspiration to other families that may be experiencing the same thing. Thank you for coming along on this journey with us.
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